UCSF Hosts a Day for Caregivers of Patients with Brain Disorders

On May 4, 2013 over 100 caregivers attended a free workshop at UCSF’s Mission Bay campus focused on coping with the unique challenges of caring for adults with brain disease. Family and friends of patients with all types of brain disorders often struggle with similar issues in caring for their loved ones. The workshop sought to give them practical information from nurses, physicians and other professionals, as well as a day to find support for themselves and connect with other caregivers.

The event was organized by the UCSF Neuro-Caregiver Collaboration – a multidisciplinary group of health care providers who span various neurological disease disciplines. The Collaboration was formed in 2012, when members of the UCSF Neuro-Oncology, Aging and Memory Center, and Palliative Care teams recognized that caregivers of patients with neurological illnesses (such as brain tumors, dementia and traumatic brain injury) are challenged with similar symptoms of the disease and side effects of treatment, as well as cognitive and behavioral changes in their loved ones.

The team hopes that by sharing knowledge and resources, educational materials and events for caregivers can be developed to enhance the care of the patient. The workshop was planned in conjunction with the Ida and Joseph Friend Cancer Resource Center of the UCSF Helen Diller Family Comprehensive Cancer Center and the Brain Injury Network of the Bay area.

Caregivers enjoyed a lunch buffet, free parking and complimentary chair massage in a positive atmosphere of support. Many caregivers spoke about how nice it was to have a warm meal and a day to themselves, while others mentioned the humbling experience of hearing from others in their shoes.

Neuro-oncologist Susan Chang, M.D., a member of the planning committee, stressed the importance of recognizing the needs of caregivers and honoring their role in the health of patients with brain diseases. “When we began organizing this event, our main question was ‘how can we help them through this process?’” said Dr. Chang. “Educating them on where they can access resources is so important.”